Diagnosed with PIRADS 4 - Need Help Finding the Best Care

swagsinmichigan

Hi Everyone -

I am 59 1/2 and diagnosed with PC on 10/20/20.  Biopsies showed involvement in 1 of 12 core samples.  Gleason at that time was 3+3=6. MRI scheduled and completed 10 days ago.  Got the results of the MRI on last Sunday (a week ago) and left to decipher all the medical jargon.  Finally spoke with my doctor on Monday.  Cutting right through the dialogue was this sobering statement:

"Challenging assessment. Nonetheless suspicious for high grade/high volume prostate cancer. PIRADS score 4 "high-clinically significant cancer is likely"

I've kind of gotten past the shock of this whole thing and I am now in "get it done" mode.  Probably the best and worst thing I have done is watch all these videos on YouTube where there is really no conclusion as it seems that each side touts their solution as superior to the other.  I recognize that it "depends" (another thing it looks like I'm going to get familiar with! A little levity) and each case stands on its own.

But, as with many if not all of you, I am faced with the decision to go with either the robotic prostatectomy or cyberknife.  My hospital has both so I am going through the process of creating basically a pros and cons decision matrix to make the best decision.  I have met with my Urologist who would be the robotic surgeon and I am scheduled to meet with the Cyberknife expert on Monday.  

Bottom line is I think I need a second, third (whatever) opinion so I make the right decision.

So, I would appreciate (pardon the very direct nature of this) your input on the following to help me and my family make the best decision:

1 - Who is the undisputed leader in Prostate Cancer (institution).  My quick research says it's Mayo, Johns Hopkins and Cleveland Clinic?  Again, quick research on my part.  Would think MD Anderson would be high up there.

2 - Who is the undisputed leader on robotic surgery (doctor/hospital)?  AND, which method is the best?  I'm seeing 1 port, 5 port, etc.  Hard to get my mind around it.

3 - Who is the undisputed expert on the cyberknife procedure?  Some say it's 95%+ effective; others say it "welds" your organs together making a removal of the prostate nearly impossible if the cancer comes back.

Maybe the final thing is can you recommend someone who has ALL the facts and is able to counsel WITHOUT BIAS the path I should go between the 2 methods?  Again, who is the leader.

I really appreciate anyone's help and I pray that all of you are doing well in your quest against this thing.

John

 

 

Clevelandguy

What to choose?

Hi Swags,

You have at least one thing in your favor, you are 3+3 which gives you plenty of time to research and decide.  The path you choose only you can make based on doing your homework.  Hopefully you will be confident when you make that decision based on your research on what is best for you and your family.  I think everyone goal is to get rid of the cancer with minimal side effects and minimal organ and tissue damage. Both methods have side effects, sometimes minor, sometimes severe.  People have done surgery with good results and bad results.  Same way with Radiation but some people will swear there is only one way to go, but there is not.  Some people in my opinion let their bias cloud their decisions.  You can also choose Active Surveilance which you just monitor the cancer for months or years. I know too many choices.........

With all that being said I had my surgery at University Hospitals in Cleveland, my Urologist/Surgeon was Dr. Ponsky and he is very good with Robotic Surgery, came highly recommended by my Internest.  I had a very easy recovery with no infections, ED went away totally in about 1.5 years, I still drip a drop or two of urine with heavy exercise so I wear a light pad every day. Just got my latest PSA test results today, over 6 yrs. with undetectable readings.  Cleveland Clinic also does excellent  work with either Robotic Surgery or external beam radiation via Cyberknife.  Don't know where you are at in Michigan or how far you are willing to travel.  I don't think you can beat the two punch combo of the Cleveland Clinic and University Hospital.  I am from the Akron area and if you have anything seriously wrong with you most people choose one of these two.  Sound like you are doing the right thing with your research, I am sure other will chime in with their experience.

Dave 3+4

swagsinmichigan

Clevelandguy said:

What to choose?

Hi Swags,

You have at least one thing in your favor, you are 3+3 which gives you plenty of time to research and decide.  The path you choose only you can make based on doing your homework.  Hopefully you will be confident when you make that decision based on your research on what is best for you and your family.  I think everyone goal is to get rid of the cancer with minimal side effects and minimal organ and tissue damage. Both methods have side effects, sometimes minor, sometimes severe.  People have done surgery with good results and bad results.  Same way with Radiation but some people will swear there is only one way to go, but there is not.  Some people in my opinion let their bias cloud their decisions.  You can also choose Active Surveilance which you just monitor the cancer for months or years. I know too many choices.........

With all that being said I had my surgery at University Hospitals in Cleveland, my Urologist/Surgeon was Dr. Ponsky and he is very good with Robotic Surgery, came highly recommended by my Internest.  I had a very easy recovery with no infections, ED went away totally in about 1.5 years, I still drip a drop or two of urine with heavy exercise so I wear a light pad every day. Just got my latest PSA test results today, over 6 yrs. with undetectable readings.  Cleveland Clinic also does excellent  work with either Robotic Surgery or external beam radiation via Cyberknife.  Don't know where you are at in Michigan or how far you are willing to travel.  I don't think you can beat the two punch combo of the Cleveland Clinic and University Hospital.  I am from the Akron area and if you have anything seriously wrong with you most people choose one of these two.  Sound like you are doing the right thing with your research, I am sure other will chime in with their experience.

Dave 3+4

Thank you, Dave.  First and

Thank you, Dave.  First and foremost, congratus on the PSA!  That is awesome.  

I'm in the Detroit area so about 3 hours to Cleveland.  I've got a great Uro here but they have the 5 port system versus one.  So, with that, just seems like fewer points of potential failure but who knows.  That is what this whole exploration is hopefully going to answer.

I got similar feedback in another forum about CC.  I'm going to get on the phone with them this week.  I would really like to do the Cyberknife but it sounds like there is no going back after that procedure, variability in PSA scores after the fact, no removal of lymph nodes to accurately stage, etc.  As you mentioned, looks like I have a little time but also don't want the "unwelcome guest" hanging around too long.  Thank you again for your response.  Have a great week.

VascodaGama

AS could be your best choice

Hi, John.  Welcome to the board. 

I would like you to share more details of the diagnosis because it doesn’t make sense what you write above. The biopsy results do not imply the statement in the MRI report. Something is not matching up. Is there other data, exams or tests?

What took you to do the biopsy? Did you have symptoms along the years that took you to exams or needed interventions?

What is your PSA's histology?

Please note that MRI do not diagnose cancer.  A biopsy does it. Either, the biopsy missed an aggressive tumor or the MRI report is erroneous. 

Low risk cases are usually directed to active surveillance (AS) which in my opinion is the preferable option for a case with 1 out of 12 cores positive of Gleason score 6 (3+3). You may want to get a second opinion from another urologist or consult a medical oncologist specialist in prostate câncer. 

Best wishes, 

VG 

 

Clevelandguy

5 port?

Hi,

What is a 5 port?  Is that five entry holes for surgery, if it is that's what I had.  They all healed up very nicely.  Got to agree with Vasco, why at a 3+3 were you given a likelyhood of high grade/high volume cancer with only one biopsy sample that had cancer?

Dave 3+4

swagsinmichigan

More Detail on my MRI

Guys.  Thanks very much for responding!  So, 2 events.

First was the biopsy in October, 2020.  That's where the initial 3+3 came from.  Was put in the active surveillance category with 90 day MRI follow up which was this month.  Here are those results.

Impression

1. Challenging assessment. Nonetheless suspicious for high grade/high volume prostate cancer. PIRADS score 4 "high-clinically significant cancer is likely".

2. Lesion at the junction of the right peripheral zone base and seminal vesicle is score 4. Three score 3 lesions include right transitional zone base, left transitional zone mid gland, and left posterolateral peripheral zone mid gland.

 

FINDINGS:

Prostate measures 4.1 cm TV x 3.9 cm AP x 3.7 cm CC, volume 31 ml.  

PERIPHERAL ZONE:

There is ADC and diffusion abnormality at the junction of the right base peripheral zone and seminal vesicle as on 7:8 spanning 1.3 x 0.6 cm and being low on ADC and high on be 1500. Probably in the peripheral zone based on 5:9. Score 4.

5 x 3 mm low ADC focus in the left posterolateral peripheral zone on 7:11 without significant elevated BP 1500. Score 3.

Mild heterogeneity is elsewhere.

CENTRAL GLAND (TRANSITION ZONE):

There is abnormal signal on T2-weighted images in the central gland due to mild to moderate BPH.

Approximately 1 x 0.8 cm vague region of low T2 in right base on 11:11 slightly low ADC and slightly high B 1500. Score 3.

Focus in the left central gland midportion measuring approximately 8 x 9 mm on 11:12. Probably T2 score of 2 though with low ADC and high B 1500 raising the score to 3..

CAPSULE: Intact.

Seminal vesicles: Normal.

Neurovascular bundles: Normal.

Lymph nodes: No suspicious inguinal or pelvic lymphadenopathy detected.

Bone marrow: No significant focal areas of abnormal bone marrow signal.

hopeful and optimistic

.

All of us when we are diagnosed go through shock and all those negative feelings  This lasts for a few months or so

I've been enrolled in an Active Surveillance protocol since March 09, and I lived and studied this protocol extensively as well as basic active treatments. 

First I suggest that you visit with a urologist who only specializes in Active Surveillance at a teaching hospital of excellence. 

I wonder the involvement , that is the percent of the core and the length of the cancerin the core that was positive. 

There is a difference in the expertise of pathologist's. Since everything that you do is based on the results found in the slides, recommend that you send them for a second opinion to a world class pathologist. Jonathan Epstein of JohnsHopkins is one of the best in the world. Insurance may pay otherwise about 250. 

Also send the slides for a geonomic test. There are a few different companies who measure the aggressiveness of the cancer on a molecular level; oncotypeDX , Decifer and Proleris. This is very important to evaluate continuance of active surveillance. 

There are various kinds of biopsies. There is a random, generally 12 core. A better that one can place more confidence in the results is a fusion biopsies, that is first a T3mri, locked into a three dimensional biopsy machine. Two such machines in use are uronav and artemis. More aggressive cancers can be found. 

I wonder your psa history?

What did the digital rectal exam (finger wave in the buttocks) reveal?

Did you have a FREE psa blood test?

Any other test?

I recommend that you very strongly consider active surveillance protocol before pursuing an active treatment that can have life changing side effects  

 

 

 

Josephg

The Final Decision is Yours, and Speak to a Medical Oncologist

As folks above have stated, at the end of the day, this decision regarding treatment options, or not, is yours, and yours alone, to make.  Continue to do your research as you are now doing, but be wary of entering the realm of 'analysis paralysis'.  You will not find one person, that after talking to him/her, will make that decision look obvious, easy, and definitively concrete to you.  I can personally assure you that it does not work that way.  You will eventually have to make this decision yourself, and once made, you cannot look back and/or question it.  PCa survivors look at the present and the future only, as it is the only constructive means to achieving and maintaining an acceptable quality of life as a PCa survivor.

That being said, I, as a lay person, and not a medical professional, do strongly encourage you to find and engage a Medical Oncologist, one you can trust and have a great doctor/patient relationship with for your entire PCa journey.  A Medical Oncologist is not predisposed to, or have any special interest/relationship/preference with any specific treatment.  A Medical Oncologist will review your situation, they will discuss the options and anticipated results and pros and cons of each, and they will make specific treatment recommendations to you that are in both your short-term and long-term best interests.  They may recommend Active Surveillance for you, based upon the information that you have provided us so far.  If they recommend surgery, and you agree, they will refer you to a surgeon who they know and trust will perform a great surgery on you.  Likewise, if they recommend radiation and/or hormone treatments, and you agree, they will personally manage the hormone therapy, and they will refer you to a Radiation Oncologist who they know and trust will perform great radiation therapy on you.

I have been a PCa survivor, who has been under the guidance of a Medical Oncologist for my entire 10 year PCa journey.  Under the guidance of this Medical Oncologist I have gone through surgery, hormone treatments, and radiation therapies.  Recommended surgeons and Radiation Oncologists have come and performed their specialties on me, and then they went away, after their jobs were complete.  My Medical Oncologist has remained with me throughout my entire PCa journey, and this is the one person that I meet with every 4 months to review my PSA results, and to discuss my current state and future plans/strategies for my PCa journey.  Most recently, my Medical Oncologist helped me obtain access to a drug for only $300 per month (which retails for $7000 per month, or $2000 per month, after insurance) for part of my current treatment plan.

I wish you the best of outcomes on your PCa journey.

VascodaGama

Second opinions

John,

Can you also provide a copy of the pathologist report on the biopsy? What is the location of the positive core and the percentage of involvement? Please provide us your PSA histology.

Regarding the MRI, they comment finding an abnormality at the peripheral zone close to the inner portion of the seminal vehicle (closer to the bladder) which as a rule is classified score 4. However, in this area several other factors could exist, such as; prostatitis, atrophy and calcifications, that may also cause low signal intensity and result in false positives.

Areas of hemorrhage secondary to biopsy are also easily confused with tumor on T2-weighted sequences. For such reasons the radiologist usually does T1 images to differentiate but nothing is specified for such taking. Surely three months post biopsy all is expected to be clean but one never knows. One example is their comment regarding the “mild bph” at the central zone which is a common area for MRI ‘s false negatives in T2-weighted. 

In other words, I think it better you get second opinions on both results; the biopsy cores and the MRI film, before committing to something. I wonder the opinion of your urologist on the MRI findings. 

Prostate cancer does not spread overnight or grow much in just three months. You have time to continue researching. Get it right for peace of mind. 

Best regards.

VGama

 

Old Salt

Just a thought

I can understand that your are concerned about the (somewhat ambiguous) MRI report. Reading prostate MRIs is not easy at all. Could you get a second opinion from someone who interprets prostate MRIs 'for a living'?

ASAdvocate

Point 3 of your original post

"3 - Who is the undisputed expert on the cyberknife procedure?  Some say it's 95%+ effective; others say it "welds" your organs together making a removal of the prostate nearly impossible if the cancer comes back."

 

It is true that radiation changes the texture of the prostate, and that removal is difficult. But, radiation, such as Cyberknife, is a whole gland treatment. So, the cancer was already out of the prostate, and surgery would not be done.

A center of excellence for SBRT/SABER/Cyberknife is MSKCC in New York. They have very impressive non-recurrence results with their version of SBRT.

A recent study for you:

 

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2723641